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I just don't know where to turn - Carers UK Forum

I just don't know where to turn

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Hi I'm a 40 year old woman that is struggling to cope with my role as a carer.

My mum who is 81 has cared for my brother all of his adult life as he has mental illness as well as other medical issues but now it's my mum that needs more caring and time than he does.

I start my paid job at 6 in the morning which takes me until 12/1 and then I go home put washing on or whatever needs doing in my house and then go to my mums. I've missed out the bit where I have to ring them at 9.30am as my brother has tablets at that time and I have to hide them and tell them where they are otherwise my mum might give them to him at the wrong time or misplace them. Then I have phone calls from my mum either while I'm at work or as I'm leaving. I then have to go and see what they need me to do. There is only me helping them so it's everything from shopping to cooking/cleaning practical help with bills or generally reassurance and support.
My mum is getting more and more forgetful and with it more angry and sometimes even nasty. It's not my mum. This may all sound a bit jumbly but that's how my head is right now.
Anyway my brother has to have tablets at 430pm which is when I'll do them some tea which is hard as he is supposed to be watching his weight and I'm trying to get my mum to eat more.
I end up getting home 6/7pm when I go home and start all over again, making tea for my own family chores etc. Then back again for the 10.30pm tablets where my mum has a tablet and inhalers etc. Getting home about 11.30pm full of guilt for what I haven't done for one or the other. I could probably be more organised where meal times are concerned but I'm just so worn out physically emotionally that I don't really know what I'm doing of half the time. The 5 minute journey to my mums usually ends up in me having time to cry about the situation and wish I could explain to someone how I am feeling. I don't get to see friends anymore so I hardly feel it fair to ring them when I'm struggling to ask for their support when I'm hardly around. I have a lovely partner but he doesn't really help around the house which causes friction between us and then he gets upset that I'm there as much as I should be. I have a sister who has cut herself off from everyone for some unknown unjustified reason and I have an older brother who works and has a wife but no children. I have reached out and asked him for support which he has ignored and his answer is to put them both in a home. This is the thing I am trying my upmost to avoid. I want them both to have their independence for as long as possible and although I'm finding it hard to give them right now I'm praying that someone an help point me in the direction of some kind of support.
I tried to get a social worker for my brother but he was vile.
I asked their doctor for support and he said he would put my mum on an admission prevention list which was over a month ago now and not heard anything back from.
I guess I'm trying to get across that I'm tired - tired of fighting and tired of being strong for everyone. I can't think straight and I'm fed up of crying. I just want someone I don't even know what I want.
Maybe this is just a bad day and maybe tomorrow will be better I don't know.
Sorry for waffling on but it's the first time I've managed to get some of how I'm feeling out for the first time. I feel ashamed and embarrassed that I can't do it all.
Hi Hayley
Well done on finding Carers UK and seeking support. I felt quite tired just reading all you do in a day- you certainly need to try and get some additional support. You say you are managing all this on your own so it sounds as though you need to start with some basics. Contact the Adult Social Services at your local council and ask for two needs assessments, one for your mum and a second one for your brother. Then and equally important you also need to ask for a separate Carers Assessment for yourself. Before you have any meeting with them , spend the next few days writing down some note of all the things you are helping with. Include eveything, medication, housework, appointments, lending your support , transport, shopping, help with finances -literally everything you do.
Then have a think about what you would like to be doing instead. What are you missing out on and what would you be doing if you weren't running about caring? Perhaps a course, or a sport or creative passtime? Make any notes how this is impacting your health, relationships etc. Then you will be able to discuss things and not forget any bits .
Are you getting all the financial help possible as a family, for starters Attendance Allowance for mum , possibly Carers Allowance for you (there are ways of claiming expenses and things to offset any earnings over the limit of £110 per week) Your brother may be entitled to things he is not claiming to ao all this can be looked at.
Please do come back to this forum and let us know how you get on and ask anything you like.
Hi Hayley, I've also been a multiple carer but never ever worked as hard as you are! Please, please contact Social Services for an URGENT Needs Assessment for your mum and brother, before you collapse with exhaustion. Both mum and brother should be entitled to support from Social Services.
Sadly, it sounds like mum is now feeling her years, and may even have the beginnings of dementia, so it is time to think not only of your immediate problems, but also what she will need in the future.
The best way of meeting her needs will depend partly on where she lives. Is it her own home, or privately rented? If she has over about £23,000 then Social Services will be able to make suggestions, but they will expect mum to contribute towards her care.
It is unrealistic for you to continue caring for your brother long term. Have you ever heard of Supported Living? I have a son with severe learning difficulties who lives in a flat and has carers to support him. Sadly, my health is in ruins having cared for a total of ten relatives.
My mum was disabled for many years, towards the end of her life she had to move into residential care because she needed round the clock nursing care. However, her home was just down the road for me and I could pop in to see her whenever I was passing. It was lovely to be just mother and daughter again. Mum never ever felt I had abandoned her.
You will get lots of support here from other carers who have found themselves in similar positions. Just ask us any question you like and you will get an honest answer - possibly five or ten different options to consider. Ultimately, the choice is yours. Because it is your CHOICE. No one can force you to care.
I support what the others are saying .Time to run up the 'Help Me!' flag up the flagpole,

What I see happening to you as I read your post is that you are turning into your mum - taking over her role as the caregiver to your brother. Then add to that caregiver to your mum AS WELL. You can't do this. You can't care for them both 'indefinitely'.

If you 'fast forward' to this time next year, this time in five years time, this time in ten years time (you'll only be 50!), then what do you imagine the situation will be? Do you think your mum will have died by then, and your brother too?

I'm not saying that to be horrible, but to show you that it's highly unlikely, isn't it, that your brother won't still be alive, and your mother probably could be too (my MIL, my caree, is 92, and could easily make a 100!).

So, really, doing what you are doing now - which is 'firefighting' - rushing around madly trying to do what you mum used to do, plus what your mum can't do for herself either, plus holding down a job, plus doing things for what appears to be a partner who isn't prepared to go halves with you in your partnership (he doesn't have to help with your mum and bro, but he MUST put in half the work your own household requires!)....simply isn't sustainable for the next twelve months, let alone the next five years, or the next ten....

It does sound like it's time for a radical rethink for your brother. Yes, it's sad, yes, I can see perfectly well with my own maternal instinct how your mum desperately wants to keep your brother at home, but is that actually possible any longer unless YOU step in completely, give up your own life, and become your brother's 'mother'....AND do the same for your own mother.

One thing is for sure, whatever happens, even if it's not residential care/independent living for your brother, or your mum (yet)(sadly, don't rule it out - dementia may make it unavoidalble, as it has for my MIL), you will need 'other people' to do some (most?) of what you are currently rushing around doing.

You can't do this singlehanded any longer.

Wishing you ALL the best, and hoping the forum can help you find a way to a less unsustainable way of life -kind regards, Jenny
My goodness, I thought I just had a bad day.

I am not qualified to help, but I do hope you take onboard the advice given above. You need some help, and asking for it is not being selfish in any way, life is far too short not to put you first for a while - if you dont, who will?
You have no need to ever feel any guilt, you are doing all you can - as I was told on my post, we are not superwoman but 'human'.

I think you can find out about social assessment on an advice page here, local council. Also from my own experience if you are not getting help from the GP either change GP for Mum and bro, or write them a very stern letter explaining the health issue's and how they cannot look after themselves. After my letter I got two GP's on the doorstep next day and much improved care for my mum.

do keep in touch with us here, sounds like you need people who truly understand to let off steam with.
take care x
I have just read this and found myself crying............ take the advice that is offered and act now whilst you still have the strenght to do it. Stay strong and try to keep the relationship with your Mum as a Mother /daughter relationship. I lost that many years ago, and would love to have it back.
I have been caring for my mother for 19 years, own home , working full time, and with little help. Gave up job this summer, and I am struggling now myself to even want to be there. Just looked at the care allowance form to help me with the national insurance credits, as I am 4 years of the receiving the state pension, and have given up.What a minefield.
Jane, have you posted your own thread? If you haven't, please please do so, and then maybe there can be some helpful forum response for your own situation, which does not sound good at all either!

I simply can't imagine being a carer for nearly two decades.

You say you lost the mum/daughter relationship many years ago? Is that because you had to become 'your mother's mother'???

'Helpless' parents are an 'issue' all by themselves, let alone when there is illness to complicate matters further.....